Postive Surgical Margin rates of Open versus Robotic, 3%, 8%, etc.

Question,
Correct me if I'm wrong but am I remembering correctly that you said you had a 12 core biopsy with 1 core coming positive and that was a G6. Then did you say that post op surgery revealed 85% of the gland was involved with tumour. Did you get a detailed report on which specific areas of the gland were biopsied. It just seems unusual to me that given the 85% involvement figure the uro only managed to pick up one spot?
Bill

questionaboutit,

I think on reading this entire topic that you believe strongly that doctors have all the information about your case, are fully informed about your condition and therefore make recommendations you can trust. That is certainly one way to interact with doctors, in fact it's probably how most people interact with doctors.

Me and my husband have adopted a different model when dealing with doctors and prostate cancer - we listen carefully to our doctors thoughts and recommendations and we ask a lot of questions about his/her diagnosis and recommendations. We think carefully about what we can actually agree with and what we don't. We believe that many doctors are ignorant about prostate cancer, including urologists and my sister who is an internal medicine specialist in New York completely agrees with me on this. We have to make constant judgements about what a doctor actually knows because some of them know very little about PCa, not because they are stupid but because they have so many other conditions they deal with and many of them simply do not keep up to date.

In order to get to this point we educated ourselves about our own case by keeping and poring over copies of every result and learning about this disease from books, this forum, our medical results, my sister who is a doctor and I am confident I know more about this disease and my husbands condition than many doctors. We have probably studied this disease for over 500 hours, an average doctor probably spends a few hours on it in medical school. My sister says for her it was a few hours 12 years ago and at that time a psa of under 7 was not suspicious.

This approach has been the correct one for us - if we hadn't pressed the primary care physician he would not have sent us to a urologist, the urologist was reluctant to do a biopsy and again we persuaded him though what we had learnt, the biopsy came back as ASAP (suspicious but not diagnostic for cancer) and the urologist told us that that it was very common that this happened (actually the literature shows that its 1-4% of the time) and not to worry. We insisted, after reading this site that we needed an expert opinion on the biopsy. The pathologist came back with 3+3 cancer. And it goes on and on....

The way you approach doctors and the way we approach doctors are different. Neither of us are wrong. But where you see people "playing doctor" on this site I see an interesting discussion that may help me broaden my knowledge about prostate cancer. No one in their right mind would take information from the internet and especially a forum as gospel (in fact it is the forum rules that you do not) but sites like these allow people to understand what other patients have learnt through their journey and that is a very healthy thing.

An

Well said questionaboutit. I agree with you completely.

questionabout it said... An38, I agree with most of what you say except I hope that any doctor that is diagnosing or treating any disease spent more than a few hours on it in medical school.   In my experience most primary care physicians know very little about prostate cancer, most of them believe that a PSA of 4 is a hard cut-off and the vast majority of them do not know simple concepts like PSA velocity. This is what they learn in those few hours at medical school. These are the people we collectively rely on to refer the issue to specialists. Specialists know a lot about their area of speciality – e.g. urologists know a lot about how to do a biopsy and surgery options. However many urologists only have a cursory understanding of the pathology, oncology of prostate cancer and often only a cursory idea of other options. So simple things, like working out the probability of organ confined disease are not   often done by urologists and this is a real shame as the tools are so easily available. I did not just choose a doctor on the internet or out of the phone book. I have seen my urologist off and on for around 20 years. He has a great reputation in the area and was the first to do DaVinci in this area. I think he said he had done 2000 open and over 400 DaVinci RPs. He laid out my options clearly for me though he was clearly biased toward surgery. I made the decision that I wanted the treatment that he felt gave me the best chance for a cure and he said RP. He clearly favored RP but also offered OP. I am phobic about staph, seen it before, and I went for RP because there was less hospital time and less of a hole to get infected. All our doctors were also picked on reputation. However see my comments about specialists above. Specialists tend to be very biased about their area of expertise and rarely do they provide a balanced picture of your options. Unfortunately unlike for most cancers (where you get sent to an oncologist first), for prostate cancer most people get sent straight to a surgeon. And surgeons recommend what they do best which is surgery, this is only natural. The only balance to this is being empowered as a patient. I do very strongly think that it is an extremely complex decision that only a doctor with the patient's chart and full medical history and the patient can make.   I would put this another way. I think that this is an extremely complex decision that only a patient can make (and preferably an patient empowered with knowledge) with the help of a variety of doctors providing them a full picture of their status and treatment options.   Regardless of what anyone may say, the OP was told he had an insignificant cancer and treatment could do more damage than non-treatment and that is overstepping the capabilities of anyone to state and such blanket statements should not be made on this forum. After all my pre - op testing, ultrasound, x-rays and scans, my own doctor, with so much info at hand, would not try to guess how significant my cancer was or make any such statement. All he would do was say "yes" when I asked him if I should continue saving for retirement. Beyond that, I was plainly told that we would not know the true extent of the tumor until it was out but the initial biopsy indicated it was a 6 and I had no visible bone mets.   So there are several points here. Medically there is a definition of what is called “insignificant cancer” which of course may seem like a strange concept to a lay person. I have seen these defined as <0.2cc or sometimes <0.5cc cancers. No one, not any doctor on the planet can say from a biopsy whether a cancer is going to be insignificant once an RP is done with certainity. However there are many cases where an insignificant cancer seems likely, eg when there is only a tiny portion of cancer in many cores of biopsy. I have read Johns posts and he is very careful to use tentative language with this – he uses such words as “likely”. And of course the only reason that John bring this terminology out in the first place is that often surgeons and doctors do not sufficiently explore the option of active surveillance in cases where the random sampling of a prostate through biopsy shows that the cancer may be small. He is basically suggesting that this is an area that Edward could explore as it may be an option that he may not have fully considered – and for people with the right temperament and with the ability to diligently follow up with tests this may be a great option.   For people with genuinely insignificant cancer the act of doing a radical prostatectomy and then often losing the ability to have an erection and the potential for incontinence means that the act of the RP could be worse than the cancer which at the insignificant stage often simply does not progress. The difficulty of course is working out who has this type of cancer and who does not and this is the hard bit. There are a variety of tests that do collectively provide a better picture than the biopsy – e.g. Colour Doppler ultrasounds, saturation biopsies, a variety of blood tests – but nothing is going to guarantee that the cancer actually is insignificant. However all these tests do give a good picture of the likelihood of insignificant cancer and many people are happy not going through major surgery when every test suggests that their cancer is insignificant. But to know and understand this option means that you either have a doctor who is fully across the AS option or you have visited sites like this/read a book and learnt about it yourself. Good luck on your journey. You have done your research and chosen an option that works for you.   Thank you questionsabout it.    PSS: Unfortunately, many people do take what they read on the internet or forums seriously.  Ask any doctor.  They have to combat internet research all of the time and patients do find questionable or quack therapies online and believe them over a doctor.  There are people, you can read their statements online, eating hot peppers for PCa today just because a semi-celebrity, Don Imus, made one statement that he was doing it and he was still well 2 months after dx. People are desperate to hear that they don't need to worry about their disease or that there are easier solutions than standard treatments, hence we need to be measured in what we advise.   If we are all going to cater for those people who are at the bottom of the intelligence stakes we should basically shut down the internet. The lack of judgement of some people should not be the reason we stop discussing our own experiences and knowledge.   Regards, An Post Edited (An38) : 1/19/2011 6:41:49 AM (GMT-7)

An38 said...



"If we are all going to cater for those people who are at the bottom of the intelligence stakes we should basically shut down the internet. The lack of judgement of some people should not be the reason we stop discussing our own experiences and knowledge.


Great point, An...and I found in one case it was best to simply employ the site's "Ignore" button feature. Don't let it drag the site down..."
__________________________________________________________________________________________________

If the above post wasn't the perfect example of needless arogance and condenscention, then nothing is. I just can't believe such an elitist attitude on a support site. HW isn't some college class or debate team. It's so sad for me to see things like this.

And bragging about ignoring a certain person's posts, doesn't show much open mindedness to me. If you block a major portion of posts out, then you are missing part of the flow of this place. I disagree with others too, at times, and get aggervated at times, but I don't like censorship, even self-produced censorship. I like to read it all, and then have my own take and opinion.

David in SC

An38 said...

 

If we are all going to cater for those people who are at the bottom of the intelligence stakes we should basically shut down the internet. The lack of judgement of some people should not be the reason we stop discussing our own experiences and knowledge.

 

Great point, An...The mindless banter, pestering and obnoxiousness can be draining, if you let it be.  I found in one case it was best to simply employ the site's "Ignore" button feature.  Don't let it drag the site down...

An, I wasn't referring it to you, actually, though I can see how it might seem that way. My cutting/pasting skills lack expertise sometimes. I knew what you were referring too. My remark was to Casey's reply to your's, where he cut out a portion of what you said, out of context in my opinion. I apologize to you for my slip out, was not intentional.

David in SC